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Empowering Change: Ugandan Youth with Disabilities Lead Inclusive Research Revolution

Ugandan Youth with Disabilities Make Research More Inclusive

The MRC/UVRI & LSHTM Uganda Research has announced the successful completion of a year-long research program by youth with disabilities, who have conducted high-quality research and shared best practices with government entities, NGOs, and fellow researchers.

Funded by the Arts and Humanities Research Council/UK Research and Innovation, the study, ‘Disabled Youth Investigates: a co-creative research program,’ aimed to address the significant underrepresentation of youth with disabilities in research, especially in low and middle-income countries. It brought together researchers from the Medical Research Council/Uganda Virus Research Institute and London School of Hygiene & Tropical Medicine (MRC/UVRI & LSHTM) Uganda Research Unit, Makerere University’s Child Health and Development Centre, the THRU Zim health unit in Zimbabwe, and the National Council for Persons with Disabilities (NCPD).

With 12.4% of Uganda’s population living with a disability, inclusive research is crucial. The project piloted a peer-to-peer support model for disability-inclusive research training, inspired by successful programs in Zimbabwe and Uganda. Fourteen young people, aged 18 to 30, underwent six months of intensive research skills training, mentoring, and internships. Paired with peers without disabilities, they collected data from 30 youths on social participation and research involvement, facilitated national and international knowledge exchange, created impactful social media messages, and developed a participatory film highlighting inclusive research practices.

The project empowered youth with disabilities to lead and conduct research, demonstrating their capability with appropriate training and support. Participants praised the inclusive approach, like Tonny Agea, a researcher with cerebral palsy and hearing impairment, who shared the unique comfort and connection in being interviewed by someone with similar experiences.

Six of the 14 youth researchers were employed by the MRC/UVRI & LSHTM Uganda Research Unit, with two securing jobs elsewhere. The project provided reasonable accommodations, including sign language interpretation and accessible office spaces. Lilian Namukasa from the National Council for Persons with Disabilities noted that the project supported affirmative action in employment per Uganda’s legal frameworks.

The peer support and mentoring model effectively trained youth with disabilities in research skills, increased their employment prospects, and highlighted the value of inclusive research. Betty Akwii, a researcher with albinism, emphasized the mutual learning in the peer support model. Ronald Kamusiime, with a visual impairment, underscored the impact of mentorship on his growth.

Youth researchers presented findings at various forums, including Makerere University Disability Day and the AfriNEAD conference in Cape Town, and participated in events like the FriendsF4R in the UK, spreading awareness about disability-inclusive research.

Dr. Femke Bannink Mbazzi, Principal Investigator, noted, “We have not only built capacity but also changed our approach to disability inclusion.” Professor Moffat Nyirenda, Director of the MRC/UVRI & LSHTM Uganda Research Unit, added, “The youth have enriched our environment and highlighted the importance of inclusion.” Dr. Herbert Muyinda from Makerere University echoed these sentiments, emphasizing the added value of including youth with disabilities in research.

The Medical Research Council/Uganda Virus Institute/London School of Hygiene & Tropical Medicine Uganda Research Unit (MRC/UVRI & LSHTM) is a renowned center for research and training, focusing on infectious and non-communicable diseases in Uganda, Africa, and globally.

The Child Health and Development Centre (CHDC) at Makerere University promotes community health and well-being through multidisciplinary research, teaching, and training, with a focus on children and women in Uganda.

The National Council for Persons with Disabilities (NCPD) is a government institution responsible for monitoring and reporting on disability issues in Uganda, supporting the implementation of the Persons with Disabilities Act 2020.

The Health Research Unit Zimbabwe (THRU ZIM) conducts research aimed at improving health and well-being, training youth researchers on the research process.

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